About the Kniest SED Group (KSG)

About the Kniest SED Website

This web page was coded and co-written by Cécilie. Starting at age five, she was diagnosed with a variety of conditions and the diagnosis eventually settled on SMD, type unknown. She has a masters degree in biostatistics. She is an avid cyclist and swimmer.

Ronna holds a Ph.D. in Psychology and works as a Licensed Psychologist at a college. At the age of sixteen, she was diagnosed with SED by Dr. Scott. She conducts a Living with SED workshop at the annual LPA conference. Ronna has been a member of LPA for over 20 years and is a Lifetime member.

KSG Advisors

Advisors are selected by the KSG elected officers. Advisors assist in providing the most current and appropriate information.

This web site is NOT intended to diagnose or treat any condition. This web site is for informational and educational purposes only. Each person should consult a medical doctor regarding any health concerns. This web site is not a complete reference and the accuracy of its contents cannot be guaranteed.

By getting information from this web site, you agree to hold harmless the authors of this web site from any and all liability arising directly or indirectly from your use of this information.

Although every effort has been taken to produce an accurate informational web site, all information should be verified independently. The information on this web site is for informational purposes only and no medical decisions should be based on its contents.

This web page is not associated with any organizations referred to on this page. External links are provided only for the convenience of the web page user. We are not responsible for any problems that occur due to the information included or omitted from this web site and the external links.

Medical Advisor

Driving Issues Advisor

How to join KSG

Please send us the following information to join. There are no fees to join. All people with Kniest, SED, SED-like condition, and friends and family members are warmly welcomed to join. Our strength is in our membership.

Kniest SED Group announce list

Every few weeks, we will send an email about what is new in the Kniest SED Group community. No SPAM of any kind will be sent out. Your email will not be traded or given or sold to any other organization. You will find out about:
* New conferences
* New information posted on the web site
* New science articles